“I’m a very loyal and unreliable friend.” ~ Bono
One of the issues you need to deal with when you or a family member lives with chronic illness is your unreliability factor.
When I speak of chronic illness, I am talking about any condition that lasts for more than a few weeks, that doesn’t conform to a normal healing arc, or a condition that cycles into more active or less active phases. The condition could be a physical affliction, a mental illness or a combination of these. For whatever reason the presence of this thing in your life means that there is always a possibility that your plans, no matter what your intentions, may go awry.
Depression makes it impossible for you to get out the front door, irritable bowel means you don’t dare go to that intimate dinner party with the people you don’t know very well, a sudden infection or a flare up for you, your partner or your child and you’re back at the doctors, back on medication, back in bed…
Too often over the years, mine has been the empty chair at the dining table, the empty bed at the retreat, the face missing from the ‘family event’ photograph.
I don’t enjoy letting people down, or being unreliable, so over time I have accepted fewer invitations and my world has shrunk small. Talk to anyone with a long term health issue and as much as they may seize the day, they often don’t know until they wake up whether the day will be a good one or not – so they become champions of winging it and making the best of those times when they feel strong, positive and with some charge in their battery.
One thing I have come to understand is that you need to have a few friends or family who know what’s going on, who are on your side, and who can cope with last minute invitations or cancellations.
Yesterday I was running on not much sleep, and it was in fact not the greatest of days. But I had promised to meet a friend for breakfast. She has her health issues too. She understands. We often text each other at the very last minute to cancel a meet-up, but we do everything we can to get there. We’ve also connected at very short notice, because both of us feel up to it, and why waste a moment?
I’ve caught up with Carly when she’s had an IV line hanging out of her neck, when I’ve been on my way to or home from hospital, and when both of us have felt very much less than glamorous.
Illness has taught me something important. Friendship is more important that looking fantastic as you head out the front door. Connection is worth more than self doubt. And laughing and being with people you care about, and who care about you, is the very best of medicine.
Today, both of us are heading back to doctors to have scans and more medical appointments. Both of us have heads full of wondering what’s going on ‘inside’.
And both of us are unreliable. Not because we want to be. Not because we are casual about commitment, or how much we care about you.
We are unreliable because our bodies run their own agendas, and we really have no idea how things might look from day to day.
We’ve learned that the cost of ‘making the effort’ to engage can sometimes be too high, and we’ll keep paying for days…
If you’re in the Unreliable Club, I’m sending you lots of love, and I want to remind you that it’s worth trying to make that connection, but that the bottom line is you ALWAYS need to honour your body, and your intuition around situations and relationships.
If you are friends or family of someone with a chronic health issue, I ask that you keep loving them, keep reaching out, and do your best to make sure they don’t end up alone and socially isolated.
One of the greatest tragedies of chronic illness is that so many people end up alone, with no support network. And when we have no one to care about us, and life is so hard, some people give up altogether.
Life is fragile, and we are all vulnerable. Let’s do our best to look after each other, to stay connected, and to live life the best we can with every breath.